My husband (aged73) had become increasingly tired and he put it down to too many candles on his birthday cake. I asked him to mention it to the doctor when he went for his annual cholesterol blood test and were staggered when the GP phoned to say he needed to see a haematologist because his blood count was low. The haematologist said it might have been a rogue result and they would watch and wait for three months, testing each month. After two months he was sent for a bone marrow biopsy which eventually confirmed he had MDS with 18% blasts. Because of the percentage they decided to do another bone marrow biopsy one month later and we were told it had already transformed into AML with blasts ‘between 22 and 30%. Having never heard of MDS we were catapulted on this roller coaster of booklets to read, discussions to have etc etc my husband was told that he would not be eligible for either a transplant or suitable for the intensive chemo. They suggested he start on Azacitidine. There was a two week delay in starting the treatment due to administrative problems and by this time my poor husband had deteriorated and was sleeping more and more during the day. Once the first cycle began he became very weak. He did not want to eat or drink and it was increasingly difficult to persuade him to do so. However he made it through and had day six of the seven injections but on the last day of the cycle he had a TIA on the way to the hospital so they didn’t do the last injections. Gradually the side effects of the Azacitidine wore off but he still did not want to eat or drink much. By the start of the second cycle he was understandably losing weight so he was put on a low dose 2mg of steroids. The difference was immediate... straight after the first tablet and now he is eating for England. Trouble is he is so very thirsty all the time and can’t stop drinking... more than 4 litres yesterday and consequently up loads of times in the night for the loo! He is more awake now and potters about a bit more but I am concerned about the raging thirst. We have only three steroids left as the original course ended and he was given four more pills to take on alternate days and then that’s it. Does anyone know what happens next? Will he revert to sleeping 20/24 and not eating or drinking again? If the steroids increased his appetite (which is surely a good thing) why not leave him on them? Sorry this is such a rambling post... but you will understand that the little grey cells have been working overtime these last few months.
Thank you for being out there.
Hi sandybarn and a second welcome to the Community and I am so sorry to hear about your husband.
Although I have a different type of blood cancer some of the issues he is facing are very familiar to me and my wife during my treatment journey.
Having had 2 Stem Cell Transplant with cells from my brother so I now help out in our Stem Cell Transplant (SCT) group.
Over the years we have had a few folks who have been through SCT who are in their 70 so 73 is not actually old for Stem Cell Transplant but if he has other medical conditions he would most likely not pass the extensive pre SCT tests as the chemo can be very very strong.
Let’s look for his team to move this is a positive direction.
((hugs))
Good morning sandybarn, he is in the best place at the moment. His team needs to find the best way forward in all this, thus made me reflect back 6 years ago when I was starting my main chemo and it looked like I would be in Hospital fir Christmas but my team worked their magic and I was home for Christmas.
Take care of yourself, the Noro virus and your husband being neutropenic and not eating is very difficult - let’s look for the corner to run on this all and get moved forward ((hugs))
Good that he got home, it often takes a few units of the red stuff to make a difference so let’s look for this to do the job.
Fillowing my second SCT I developed the RSV virus - resulted in a week in isolation - great fun.
You mentioned being on an Island- where are you?...if you don’t mind me asking
